For seven years, I’ve had a Google alert set up for a specific phrase. I get an email about it every week, usually containing very little. It’s mentioned in a research paper here, a healthcare report there. The alerts are so inconsequential that I barely click through.
Since January, that’s changed. My email updates are peppered with links overflowing with alarm and a shocking amount of misinformation. I see similar posts on social media and WhatsApp. People I haven’t talked to in years are sending me messages: “I think I’ve got it. Will I be okay?”
The phrase is Guillain-Barré Syndrome. I got it seven years ago at a time when it was so unknown that I had to explain to people how to pronounce it – gee-yun bah-ray. Now, everyone’s got an opinion, mostly coloured by misinformation. As I write this, India has reported at least 21 GBS-related deaths since January, 17 of which are in Maharashtra. At least 207 cases were reported in Pune.
At least two news reports warned that GBS is “slowly spreading its tentacles” to other states.
This is, and I don’t say this lightly, infuriating.
Here’s what happened to me
In December 2017, I got food poisoning. It was bad. I spent the last days of the year severely ill. I also had constant pins and needles in my toes and fingers, and my legs felt like they’d fallen asleep. Within a couple of days, I couldn’t stand up without falling.
On the second day of the new year, I went to the emergency room. I was admitted and did a battery of tests. At 9.30 pm, a neurologist told me I had GBS. I’d never heard of it. I couldn’t pronounce it. I couldn’t even spell it well enough to Google it.
What I eventually learned is that GBS is an autoimmune disorder. It’s triggered by a bacterial or viral infection – food poisoning, in my case. Your immune system mistakes your nerve cells for an infection and attacks them. Early symptoms are numbness and tingling in your extremities. But it spreads quickly from your extremities upwards, paralysing as it goes.
And here’s the main thing – not everyone who gets a bacterial infection will get GBS. It happens to some people, it doesn’t to others, and its mechanism is almost a complete mystery.
I talked about my entire experience with GBS here. The short version of the story is that because I was diagnosed so quickly by a neurologist who was intimately familiar with GBS, my treatment started within 24 hours of being admitted.
I was paralysed from the knees downwards. I lost sensation in my fingertips. I couldn’t walk, not a step. My calves were like dead things, unfeeling and unmoving. But I started treatment fast enough that the paralysis didn’t spread. There are too many cases of patients not going to the hospital, of doctors not diagnosing in time, so the paralysis spreads. For context, my legs lost sensation overnight. If untreated, the paralysis spreads to your lungs and you get put on a ventilator. You could die.
I didn’t. My doctor regularly checked my ability to breathe, to make sure I didn’t need to be ventilated. I spent 14 days in the hospital. I did multiple rounds of intravenous immunoglobulin infusion therapy over five days, administered through a drip. (The other treatment option was plasmapheresis.) It cost Rs 5 lakh, and that was only for the medication. I had insurance, though my provider initially refused to give me cashless treatment because I didn’t have an Aadhaar card. My husband tweeted about it, The Times of India did a story on it, and the provider capitulated.
I then had intensive physiotherapy, six times a week, and relearned how to walk. I had terrible nerve pain and a parade of unusual experiences.
But long story short – I was lucky. I was privileged. This wouldn’t even be one of the worst health issues I would go through. My GBS was acute, not chronic. It happened, it ended, and I’m completely fine now. There’s just some numbness in my toes and the tendency to panic over small, specific things – all a hangover from my GBS days.
Here’s what you should know
GBS isn’t contagious. It’s triggered by an infection. In Pune, the outbreak is linked to a bacterial infection triggered by a species of bacteria called campylobacter jejuni. This piece in Scroll explains it well.
GBS has occasionally made the news before. During the pandemic, it was listed as a side-effect for a Covid vaccine. In 2023, there was an unusual increase in GBS cases in Peru. Two-thirds of cases were linked to campylobacter.
I’ll say it again because it bears repeating: If I get food poisoning, you can’t ‘catch’ it from me through the air. If I get GBS, you can’t catch that from me either. GBS is not an infectious disease.
Outbreaks of illnesses are terrifying, especially when you’ve never heard of them before. The pandemic taught us that. I don’t blame anyone for being anxious. We’re still in the early stages of understanding how and why so many clusters of cases are being reported. That is concerning and that’s why authorities are encouraging people to be especially safe about the water they drink and the food they eat. That’s why people should be educated about early symptoms of GBS so they know when to seek help.
But here’s what I do blame. I blame media houses that aren’t investing in health journalists to report accurately and with context on an illness. I blame ‘influencers’ who tweet trumped-up nonsense because they know it’ll get them clicks. I blame blue-tick politicians and others scare-mongering about GBS having “come to the doorsteps of Karnataka” or Mumbai reporting “its first case”.
This is absolute nonsense. Mumbai is not reporting its “first case” because GBS is not a new disease. It’s an uncommon disease, but there have been cases before. In the seven years since I’ve had GBS, I’ve interacted with multiple people across the country who’ve got it. Their stories didn’t make headlines because there wasn’t a hullabaloo over GBS at the time.
If a 10-year-old boy in Tamil Nadu got GBS two weeks ago, that doesn’t mean GBS has “come to Tamil Nadu”. It means this is one more instance of GBS in Tamil Nadu, as there no doubt has been, at regular intervals, over the past weeks, months and years.
It’s okay to be cautious if you’re in a position to be. But don’t forget the basic facts. GBS, by itself, is not contagious. Since there appears to be an outbreak, be mindful of warning signs, especially following food poisoning or any kind of infection. See a doctor if you’ve got symptoms. But don’t panic. Most people can recover completely.
And never believe everything you see online.
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